BLADDERBLADDER HEALTH CANCER

Muscle Invasive Patient Guide Table of Contents Urology Care Foundation Bladder Health Committeee

Patient Story...... 3 Introduction...... 3 Chair GET THE FACTS Angela B . Smith, MD, MS What is Muscle Invasive Bladder Cancer (MIBC)? . . . . 4 Committee Members What are the Risks Associated with Bladder Cancer?. . 4 Elizabeth Timbrook Brown, MD, MPH How does Bladder Cancer Develop and Spread?. . . 4 Ronald W . Glinski, MD, FACS What are the Symptoms of MIBC?...... 4 Jairam R . Eswara, MD GET DIAGNOSED Sima P . Porten, MD, MPH, FACS What Tests are used for MIBC?...... 5 What are the Grades and Stages of MIBC? ...... 5 GET TREATED What are the Grades and Stages of MIBC? ...... 6 What are Possible Side Effects of MIBC Treatment? . . . 7 OTHER CONSIDERATIONS What Must I Do after Treatment?...... 8 What are my Chances of Recovery?...... 8 GLOSSARY

2 Patient Story

the tumor and took a tissue sample to find out how far the cancer had progressed . Mike was later told he had muscle invasive bladder cancer (MIBC) . Soon Mike had a whole health care team to help and they discussed many health care choices . Mike chose neoadjuvant (before ) chemotherapy followed by surgery . Mike and his team also chose a option and a chemotherapy port, which is a small device placed under the skin for easy access to the bloodstream . Mike’s cancer doctor also talked about the best drug choices for his care . After four 3-week cycles of chemotherapy, Mike’s bladder was removed . At first, Mike found it hard to face this disease . Later, he found finding facts about bladder cancer helped reduce the stress that came along with his cancer journey . Mike also found his journey to healing his body and his mind involved At 58 years old, Mike noticed he needed to pass urine more workouts, patience and perseverance . For Mike, another often, even at night, and his stream was not strong . Once part of coping with cancer involved talking with others to he noticed blood in his urine, Mike quickly saw his doctor . help give comfort to those with this disease . A urine test did not show cancer cells and antibiotics did not help him heal . Later, a scan led to a diagnosis of bladder cancer . Mike’s doctor scheduled a surgery called transurethral resection of bladder tumor (TURBT) . The doctor removed

Introduction

Mike’s personal story shows that there is life after a bladder One of the most important signs of bladder cancer is blood cancer diagnosis . But you have to be alert, because bladder in the urine . Pay attention to your body . Tell your doctor if cancer often goes undiagnosed . you see what looks like blood in your urine . There are ways Many people ignore what may be minor symptoms of to treat the disease, and your medical team will be there to bladder cancer . Some may never know until they go for a work with you towards recovery . Know that there is hope regular checkup and find that they have bladder cancer . Get if you see your doctor quickly . This guide will tell you about to know the symptoms . If you see any of them, act quickly, MIBC and what you can do about it . just as Mike did .

3 GET THE FACTS

What is Muscle Invasive How does Bladder Cancer Bladder Cancer (MIBC)? Develop and Spread?

The bladder is where the body stores urine before it leaves Most bladder cancers start in the inside lining of the bladder . your body . Urine is the liquid waste made by your kidneys . MIBC starts in the inner bladder layers and then grows into Sometimes our body cells do not divide in the orderly way the deep muscle . Over time the tumor may grow outside the that they should . This abnormal growth is cancer . Bladder bladder into tissues close by . The cancer may then spread to cancer is cancer that begins in the bladder . A person with lymph nodes, the lungs, the liver and other parts of the body . bladder cancer has one or more tumors (lumps) made up of abnormal and unhealthy cells . Muscle invasive bladder What are the Symptoms of MIBC? cancer (MIBC) is a cancer that spreads into the thick muscle deep in the bladder wall . It is a serious and more advanced stage of bladder cancer . MIBC is a more harmful kind of Blood in the urine (hematuria) is the most common bladder cancer . It should be treated without delay . symptom of MIBC . You may have it and have no pain . If you can see blood in your urine, do not ignore it . Tell your healthcare provider right away . Even if the blood goes away What are the Risks Associated tell your doctor anyway . with Bladder Cancer? Frequent urination and pain when you pass urine (dysuria) are less common symptoms of bladder cancer . If you have • Smoking is a big risk factor these symptoms, it is still important to see your health care • Workplace exposure to chemicals used to make plastics, provider . Tests can show if you have a urinary tract infection paints, leather and rubber or something more serious, like bladder cancer . • Cyclophosphamide, a cancer drug • Radiation to the pelvis Getting the right information is key to reducing • There may be a genetic link the stress that comes with a cancer diagnosis.

GET DIAGNOSED

•  — this very common procedure lets your What Tests are used for MIBC? doctor see inside your bladder . Your doctor will pass a tube (cystoscope) through your into your bladder . The tube has a light at the end so that your If your health care provider believes you may have MIBC, doctor can see more clearly . There are two types of you may be referred to see a urologist . Your urologist will cystoscopy procedures: do a full medical history and physical exam . Further tests o Flexible cystoscopy — the doctor uses a thin may include the following: cystoscope that can bend . This will most likely be • Urine cytology: The color and content of your urine will done in the office with local anesthesia to look for an be checked . This test will also check for cancer cells . unusual lump or for biopsy . • Comprehensive metabolic panel (CMP) to see if your o Rigid cystoscopy — the doctor uses a bigger, blood work is normal straight cystoscope that has space for instruments to • X-rays, CT scan or MRI pass through . This allows them to take samples or • Retrograde — an X-ray to look at your resect (cut away) the tumor . Usually, you will be put bladder, and kidneys to sleep so that you will not feel what is happening .

4 * All words that appear in blue italics are explained in the glossary. Cystoscopy Procedure What are the Grades and Stages of MIBC?

Grade and stage are two ways to measure and describe how cancer develops . Tumors can be low or high grade . High-grade tumor cells are very abnormal, and more serious . They are more likely to grow into the bladder muscle . Doctors can tell the stage of bladder cancer by taking a small piece of the tumor . This is called a biopsy and is often done as part of a TURBT . A pathologist in a lab will look closely at the sample under a microscope and decide the stage of the cancer . The stages of bladder cancer are: • Ta: Tumor on the bladder lining that does not enter the muscle • Tis: —A high-grade cancer . It looks like a reddish, velvety patch on the bladder lining • Positron emission tomography (PET) scan uses a • T1: Tumor goes through the bladder lining but does not tracer to show where the cancer is and how much it is reach the muscle layer growing . • T2: Tumor grows into the muscle layer of the bladder • Transurethral resection of bladder tumor (TURBT) may be done during cystoscopy as part of your • T3: Tumor goes past the muscle layer into tissues diagnosis . surrounding the bladder • T4: Tumor has spread to nearby structures such as TURBT Procedure lymph nodes and the prostate in men or the vagina in females In MIBC, the tumor grows into the deeper layers of the bladder wall (Stages T2 and beyond) . The high-grade tumor cells of MIBC are more likely to spread and are harder to treat .

Stages of Bladder Cancer

5 GET TREATED

What are my Choices for MIBC Treatment? Partial Cystectomy For partial cystectomy, the doctor removes only part of your Your treatment options will depend on how much your bladder . Partial cystectomy is less likely for MIBC patients cancer has grown . Your urologist will stage and grade your because the cancer may be too advanced for this option . cancer and consider how to manage your care depending on Your doctor may offer partial cystectomy in select cases of your risk classification . Risk may be low, intermediate or high . bladder cancer, when the tumor is in a specific part of the bladder and does not involve more than one spot in the Treatment also depends on your general health and age, but bladder . there are basically two options for treating MIBC: • Bladder removal (cystectomy) with or without When your bladder is removed or partly removed, you will chemotherapy . There is radical cystectomy and need another way to store urine and remove it from your partial cystectomy . body . This is called urinary diversion . There are several methods of urinary diversion such as urostomy, ileal • Chemotherapy with radiation, in addition to TURBT conduit, continent cutaneous reservoir and orthoptic neobladder . Descriptions of these methods are at the end “Get a second and possibly a third opinion of this guide . quickly. The one area you can control is selecting your healthcare partners – don’t be Chemotherapy with radiation afraid to ask the tough questions.” Radiation alone is not given for MIBC . It is usually done – Mike along with chemotherapy and after surgery . Chemotherapy with radiation may be used for bladder preservation (keeping the bladder or parts of it) . Your doctor may suggest Radical Cystectomy bladder preservation when radical cystectomy is not an option or is not wanted . A radical cystectomy is when your whole bladder is removed . Radical cystectomy is the most common surgery Before starting chemotherapy and radiation, your surgeon for MIBC . The doctor will remove: will resect (cut away) the tumor during a transurethral resection of bladder tumor (TURBT) . Your lymph nodes • The entire bladder may also be removed . This is done to try to get all of the • Nearby lymph nodes cancer cells possible . • Part of the urethra Some drugs that may be used along with radiation are • The prostate (in men) cisplatin, 5-FU and Mitomycin-C . Once treatment is • The uterus, ovaries, fallopian tubes, and part of the complete, follow up includes ongoing cystoscopy exams, vagina (in women) . Other nearby tissues may also be cross-sectional imaging (e .g . CT scan) and other procedures removed . to check to make sure the cancer has not come back . Most likely, chemotherapy will be given before removing Radiation therapy uses high-energy rays to kill cancer cells . your bladder for the best chance of survival . The The radiation comes from a large machine that aims beams treatment will probably be Neoadjuvant cisplatin-based of radiation at the bladder area in the abdomen . You may chemotherapy (NAC) . go to a hospital or clinic five days a week for several weeks You will likely have your bladder surgery about 6-8 weeks to get radiation therapy . after completing chemotherapy . If you do not have chemotherapy before surgery, then you may need it after surgery depending on the tumor stage . This is adjuvant chemotherapy . "I learned that the recovery process is seldom a straight If you have poor function, hearing loss, heart line, so patience and perseverance are required.” problems and some other conditions, your doctor may not – Mike recommend chemotherapy .

6 What are Possible Side-Effects • Infections from your urinary diversion . Kidney infections of MIBC treatments? are possible too . • Deep vein thrombosis (DVT) blood clots that form in veins in your legs . You will have side effects after most MIBC treatments . But there are things you can do to help feel better . If you smoke, • Hot flashes for women who have not had menopause get help to stop . Start exercising and eating more fruits and and had their ovaries removed . vegetables . Healthy eating will help you recover faster . • Sex and fertility issues Bladder cancer surgery is likely Here is some of what you may expect: to change your sex life . Both men and women may find some aspects of sex difficult after surgery . If you have a • Pain or discomfort work with your healthcare team to partner, you may be worried about sexual intimacy and get control of your pain . There are many ways to do this . your relationship . It may help you and your partner if you • Gastrointestinal (GI) problems. You may have talk about your feelings . problems with bowel function right after surgery . Your Men can no longer father a child after the prostate is health care provider will take steps to check bowel removed . Women can no longer get pregnant if the function and avoid GI problems . uterus is removed . It is helpful to think and talk about • Nausea, vomiting and diarrhea can be side effects of these issues ahead of time . You (and your partner) may radiation therapy, though the therapy is painless . benefit from the help of a counselor who specializes in • Leaks from the stoma (opening) . talking about sexual issues .

OTHER CONSIDERATIONS

help with regular exercise, a healthy diet and trying to quit What Must I Do after Treatment? smoking . Your health care provider may also recommend a cancer support group or counseling .

Make sure to stay in touch with your health care provider . You should expect to return to your doctor for quite some time What are my Chances of Recovery? after treatment and surgery . Follow-up is not the same for all people . However, it may If you have a cystectomy (surgical removal or partial removal include some or all of the following: of the bladder) the cancer return rate can be from 20-30% • Imaging (e .g . CT scan) about every 3-6 months for 2-3 for stage T2 . It can be 40% for T3, greater than 50% for T4 years; and then once a year . and usually higher when lymph nodes are involved . If your bladder cancer does recur, it most often will happen within • Laboratory tests may be every 3-6 months for 2-3 years; the first two years after bladder surgery . and then once a year . Kidney and liver function tests will be a part of these tests . • Assessment for quality of life issues, such as urinary symptoms and sexual function . Regular follow-up is very important. Stay in touch with your care team for best results. If you had bladder removal surgery, it takes time to heal . The time needed to recover is different for each person . It is common to feel weak or tired for a while . Like any other major surgery, bladder surgery may have complications . But you can

“You play a key role in your recovery. Do what they teach you in the hospital and, even if you must force yourself, walk every day. Be vigilant in your follow-up.” – Mike

7 GLOSSARY

Adjuvant Chemotherapy Cystoscope (rigid) A type of chemotherapy given after cancer surgery . A rigid cystoscope is bigger than the flexible scope, is straight and does not bend . Not bending allows surgical Biopsy instruments to go through it . A small piece of body tissue that is removed and examined to find out the presence of, cause of, or how advanced a Cystoscopy disease may be . A doctor passes a cystoscope through the urethra into the bladder during this procedure . Bladder preservation Bladder preservation means keeping the bladder or part of it . Cytology Looking at cells from the body under a microscope . Chemotherapy Drugs prescribed to kill cancer cells . Hematuria Blood in the urine . Comprehensive Metabolic Panel (CMP) A blood test that measures the levels of blood sugar Ileal Conduit (glucose), electrolyte and fluid balance, and kidney and liver A type of urinary diversion . A piece of upper intestine is function . Electrolytes keep your body's fluids in balance . used to create an opening (stoma) on the surface of the abdomen . The urine leaves the body by the opening and is CT-scan collected in a bag for emptying . Also called computerized axial tomography (CAT) scan . This procedure uses both x-rays and computer technology to Magnetic Resonance Imaging (MRI) produce detailed images of the body . A procedure that uses a magnetic field and radio waves to create detailed images of the organs and tissues in the body . Continent cutaneous reservoir A pouch that is placed inside your body . An example is an Neoadjuvant cisplatin-based chemotherapy artificial bladder made from intestinal tissue . (NAC) Adjuvant means “added to .” This means you will get Cystectomy chemotherapy along with having your bladder removed . The surgical removal of the bladder . A cystectomy may be all Neoadjuvant means that the drug is given before the doctor (radical) or part (partial) of the bladder . removes your bladder .

Cystectomy (partial) Orthoptic neobladder The tumor is surgically removed and part of the bladder is left A type of urinary diversion where a surgeon makes an intact . A partial cystectomy is done only in particular cases . internal pouch, much like the bladder, to store urine . Ureters are connected to this new “bladder” to empty through the Cystectomy (radical) urethra . The complete bladder is surgically removed . This is the more common treatment for bladder cancer . PET scan For a PET scan, you are given a special drug (a tracer) Cystoscope through your vein, or you may swallow the drug . Your cells A thin tube that has a light and camera at the end of it to will pick up the tracer as it passes through your body . When see inside the bladder cavity during a cystoscopy . There are a scanner passes over the bladder, the tracer allows your two types of cystoscopes, flexible and rigid . doctor to better see where and how much the cancer is growing . Cystoscope (flexible) A flexible cystoscope can bend and is usually used in the office to look into the bladder .

8 Retrograde Pyelogram Urinalysis A procedure that uses x-rays to look at the bladder, ureters An analysis of a urine sample that tests for physical, and kidneys . The doctor injects a radio contrast liquid chemical, and microscopical properties, usually done to test into the to see what it looks like, usually during a for the presence of disease, drugs, etc . cystoscopy . Urinary diversion Transurethral resection of bladder tumor A new way to store and release urine after bladder removal . (TURBT) A surgical procedure where a doctor uses a rigid cystoscope Urologist to see inside the bladder . The doctor will take tumor samples A doctor who specializes in the study, diagnosis and and resect (cut away) all of the tumor that can be seen . This treatment of problems of the urinary tract . is done under general anesthesia . Urostomy Tumor grade A method of urinary diversion where a surgeon creates an A measurement of how aggressive cancer cells are . Tumors opening (stoma) in the abdominal wall, through which the can be high grade or low grade . High-grade tumors are the urine can leave the body . A pouch may be needed to collect most aggressive and more likely to grow into the bladder the urine . muscle . X-Ray Tumor stage A form of radiation produced by special machines that take A measurement that tells how much of the bladder tissue pictures of the inside of your body . has cancer .

9 Notes

10 Notes

11 About the Urology Care Foundation

The Urology Care Foundation is the world’s leading urologic Disclaimer Foundation—and the official Foundation of the American This information is not a tool for self-diagnosis or a Urological Association . We provide information for those substitute for professional medical advice . It is not to be actively managing their urologic health and those ready used or relied on for that purpose . Please talk to your to make healthy changes in their lives . Our information is urologist or health care provider about your health concerns . based on the American Urological Association resources and Always consult a health care provider before you start or is reviewed by medical experts . stop any treatments, including medications . To learn more about different urologic issues, visit UrologyHealth.org/UrologicConditions . Go to UrologyHealth.org/FindAUrologist to find a doctor near you .

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